It’s a thankless task being the group support officer, I feeling quite lonely and unappreciated. I think I might just give it one more go and then perhaps throw in the towel. I’ve just got back from our last “meeting” which consisted of me sitting there playing solitaire on my mobile. It would have been nice to have someone to talk to about my recent problems but it’s not that nobody listened, nobody actually turned up. Disappointed, moi? I am but not as much as if I had gone to Birmingham with all the stuff and spent £3.40 on a daysaver and then £4.50 for a train ticket to New Street station. Of course I’m disappointed, I have put quite a bit of effort into arranging this, the calls, the emails, buying craft materials, biscuits, squash (no additives, ADHD friendly ) setting up events on Facebook, promoting the meeting on the TA forum, the list goes on….. What people don’t realise that as well as taking up my own personal time there’s only a certain amount of cash in the support group kitty and booking suitable spaces for meetings, even though I got a reduction due to being a local it still costs money, money that we as a group will have to start raising for ourselves. I mean this cycle could go on until we run out of cash. I have already done some fundraising by taking part in the knit-a-thon, I have some other ideas up my sleeve and also fellow KVCC group leaders have been telling me about some other sources of funding. In order for these ideas to come to fruition I need help and support, I’m not Wonder Woman, I’m a fellow ticcer, I struggle with some stuff, I hate asking for help but sometimes I do need help and support, it’s also nice to feel appreciated (sometimes).
Whilst I was waiting a local boy came into the KVCC foyer area where I was sitting, from outside he had noticed that the lights were on in the youth club room that I had booked and asked me if the youth club was open. Warwickshire council have just cut the funding for the youth club, so that facility is no longer available to the village kids. It seemed quite harsh to turn him away when probably all he wanted was somewhere to chill out with his friend, a game of pool and chat to a friendly grown-up.
So please, I’m not after a medal or anything, just be aware of the money and the effort that us support group co-ordinators put into our role, I like to think that amongst the other co-ordinators up and down the country that I’m the most accessible, you can find me here, on the TA forum and on Facebook, I’m just an email, call or text away.
Aw hun.wish i wasn't so far away hun so I'm sending you a cyber hug. meanwhile a thought comes to me,glad the ol' grey matter still working, but if you can maybe a sort of merger might be possible.if you contact the head of that youth club in exchange for a fairly regular room for TS meetings,you could give them some regular cash from the kitty.meanwhile maybe some of the youth could do some sponsored events to help raise money for TS. see the picture? Just a thought? X
I get charged by Nuneaton & Bedworth council for use of the room, but as I'm a local I get it at a discounted price. If the youth club were to fundraise they would do so for themselves, as my village is probably one of the most deprived parts of North Warwickshire (Camphill in Nuneaton probably the poorest) the youth club was open every other evening and had a paid youth worker who was excellent, but the council pulled the plug on the funding. The other group leader I was talking about was a friend who runs the Girl Guide and Brownie groups so obviously is a volunteer. The village kids would jump at the chance to raise some funds under the guidance of an adult, infact the village fete had the plug pulled on it as well due to burucracy and lack of funds. The kids were really up for the fete and were hoping to raise some funds.
Hi Catherine, please remember what I said - you are doing a wonderful job, not only as group coordinator, but also as a befriender. You are in touch with people via Facebook, Heathunlocked, email and I know you will also call people if they need to chat. You have also already held two successful meetings where you have provided much need information and support to those who needed it. Please don't be disheartened about the lack of attendees to the latest meeting, this could be down to a number of factors for different people. Location - getting there, school holidays - they may be away, or simply other prior commitments. Keep up the good work and perhaps we can meet up for a coffee and a chat the week after next. Speak soon Julie
Catherine, I understand your frustration but please don't lose hope. Having said that this is partly why our Notts meetings are so low key. Meetings got cancelled regularly and in turn I lost enthusiasm as felt I was pestering people rather than keeping them informed of meetings etc. Having said that I know how much our members appreciate just knowing that there is a support group there when they need it. I think the problem is that you arent getting the reciprocated support which is a real shame.
Jules is right though about this being a funny time with people being on holiday and lots of other stuff.
Our summer has been hellish and ive felt like cancelling our support group meeting next Sunday as am not sure what I can give right now. But I won't because I have received some fantastic support from someone special who could well have not bothered given her own situation. Spurs me on to do what I can even if it makes a difference to just one person.
Easy for me to say all this as its not me that has ts, it's my 10 yr old son. And we were desperate to find support for him and us when he was diagnosed. There was nothing at that time so we set up a group.
I honestly don't think that as a group co-ordinator you will get the support you need for yourself which is the crux of the matter and bloody hard on you.
But that could change at any time if you keep it going xxx
I am having a bit of a stressful time lately due to my partner's latest exploit and the everlasting period, nearly 4 weeks now! And yes, I could do with some emotio support for myself, I do kind of get some gratification for running the support group, but rarely my problems get aired, hence the blog. I cancelled the previous meeting, I didn't want to cancel this one as I didn't want to jepodise my relationship with KVCC, I thought that if I had cancelled it like last time I'd get a reputation from the council's perspective as being a poor client and that we lose a great and cheap facility, thus creating more stressful legwork for myself trying to find another comparable both in quality and value for money, the picture above just shows half of the room, there is also a massive flat screen TV (with xbox and dvd player) and a liitle kitchen type area.
anyone know of any support groups for parents of children with Tourettes? or support groups for...
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